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LiddleBuddha
New User
Joined: 01 Aug 2009
Posts: 1
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 Posted: Sat Aug 01, 2009 12:10 pm Post subject: Large Cell Neuroendocrine Carcinoma - Questions |
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Hello All -
Greetings! I am new here & this is my first post. I've read through some of the posts and have already learned a bit. Here's the scenario...
My mom had surgery on 7/21/09. They did a hysterectomy, removed both ovaries / fallopian tubes, and removed two very large ovarian tumors.
The Left side = Large Cell Neuroendocrine Carcinoma, 9cm at largest point. Right side = same as above, but also with Mucinous Cystadenoma, 23cm at largest point.
The malignancy is/was in the:
- ovaries
- omentum
- peritoneum
They believe the cancer originated from her lungs (most likely, we're just waiting on results of a lung biopsy), or her kidneys, and quickly metastasized to both ovaries. They said this particular cancer is rare and very aggressive.
According to her physicians, (and everything I've read online), the prognosis is pretty bad.
The docs said she could try a course of chemotherapy (3 days/wk, for 6 mos), and that could possibly buy her 3 to 5 years. If she doesn't do the chemo, they weren't really willing to speculate, but said maybe 2 to 3 yrs.
My questions:
- Does anyone here have any experience with this type of cancer? We're looking for lots of info and/or guidance.
- Besides chemotherapy, might there be any other treatments worth researching? Experimental, or clinical trials?
- Any recommendations for my mom regarding lifestyle, diet, etc.?
Those are my questions for now. I know I'll have more but figured I'd start there.
Thank you very much for reading, and thanks in advance for any replies!
Regards,
Dave |
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brainman
Site Admin
Joined: 13 Oct 2005
Posts: 5612
Location: Tennessee
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| Posted: Sun Aug 02, 2009 11:58 am Post subject: Re: Large Cell Neuroendocrine Carcinoma - Questions |
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I Dave. I am very sorry about your mother's advanced cancer. I do not know anything about a LCNC so cannot be of much help.
In terms of her treatment options, the surgery is the first line of attack. The second would be chemo... especially since it it has already spread and the fact that they do not know where the primary is. It is not like we have an organ called our "neuroendocrine". Radiation is very likely out of the question.
As for the prognosis for your mother, I will say the same thing that I always say. A prognosis is just an educated guess. I do like to know my prognosis, but only in order to be able to set some realistic goals for the things I would still like to do with whatever time I have left. After that, I try to set aside the prognosis and live one day at a time working to achieve those goals. They do not need to be complicated or extremely important ones. When my father was so weak that he could not do much for himself, every morning I would ask him: "What would you like to do today?" Sometimes the answer was he wanted to go see someone or eat somewhere. I would then do my best to help him. You could do the same for your mother.
You and your mother are in my thoughts and prayers.
_________________
Jim
Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
http://cancerforums.net/viewtopic.php?t=2405
My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029
Twitter: @JimHawkins54 |
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hpenhey
Regular
Joined: 04 Aug 2009
Posts: 12
Location: Perth, Australia
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| Posted: Tue Aug 04, 2009 12:33 am Post subject: Re: Large Cell Neuroendocrine Carcinoma - Questions |
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Hi Dave
Sorry to hear about your Mum. You ask for suggestions for lifestyle.
I don't know anything about those cancers but I do know that people who do well go for a self defined quality of life for the time they have left.
Doctors have a clear understanding of what quality of life means from their perspective, but this isn't what I'm talking about. In my research of people who have done better than expected quality of life depended on the individuals values and feelings. For one person it might be the assurance that their family loves and cares for them, for another it is in taking charge of their own toileting arrangements despite difficulties. For someone else quality is experienced in sitting on the grass under a tree feeling the power of nature soak up through their body.
So what is it for your Mum? And let her change her ideas from day to day as what she feels as quality of life on each day will change depending on her energy levels and the process of trial and error.
For what it is worth, if the doctors are suggesting 2 to 3 years without treatment then my survivors stories would suggest some considerable hope at stretching the time in at least some cases and she just may be one of those. But as long as she can say that she has lived life with quality then even if she doesn't get the length you want she has lived well.
For more information on the components of personal resiliency the results of the study has been published in an academic journal. I don't know where you live but here in Australia you can get access to medical journal articles by going to a medical university library and asking them for it.
Denz-Penhey H, Murdoch JC. Personal resiliency: serious diagnosis and prognosis with unexpected quality outcomes. Qualitative Health Research 2008;18:391-404.
Note to forum moderator - I hope it is OK to put this reference in as I think it might be helpful to your users.
_________________
Harriet Penhey
Health Researcher
Carer of sister ill for 20 years cancer of cervix, now well for 2 decades. |
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brainman
Site Admin
Joined: 13 Oct 2005
Posts: 5612
Location: Tennessee
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